Our patron, Paul Daniels and his wife Debbie Mcgee, joined supporters of the MS Centre last Monday for the launch of the Reading Half Marathon 2013. The Centre will be next year's top tier local charity and we are now looking for runner to make up the team.

For more information on the Reading Half Marathon click here. If you would like to run on behalf of BMSTC please email Jackie@bmstc.org or call Jackie on 0118 901 6000.

Tuesday, 21 August 2012

Article forwarded to us by Heather Cresswell from the Reading & Wokingham Districts MS Society:

Westmead Update:
August 2012

Introduction

Lots
has been happening since the last update, with much still to do.

We
have identified a possible new site for a Westmead replacement building in
Woodley and an additional funding application has been made. Negotiations to
date have gone well but there is still more to be done if we are to get all we
want in the projected extension.

We
have also had further discussions with the Neuro rehab team around Westmead
offering a follow on rehab programme and again this seems to be progressing
well.

Below
you will also find a summary of several other areas that we are currently
exploring – sports and exercise; hydrotherapy and a new post of
outreach/development worker.

And
so to the summary:-

The Building

ØA
bid has been submitted for an additional £250,000. We should know the outcome
in the next month or so. There is very strong competition for this funding but
we feel our bid is a strong one too.

ØThe bid for funding includes areas for
community use. The intension that is built there will have areas specific to
Westmead but the whole complex will be seen as a community hub. The funding bid
reflect this.

ØNearby
is Alexandra Place
(extra care housing complex) with facilities that we anticipate being able to
access. These include an exercise room; therapy room; IT suite and community
café.

ØIncluding
in the funding bid is specialist equipment to go in the exercise room at Alexandra Place.
These include passive exercise machines which will be used for rehabilitation
purpose – the PCT will be organising exercise classes for individuals who have
had strokes, heart attacks etc or who need to build up cardio-vascular/core
strength. Discussions are ongoing as to access by other groups or individuals but
it is anticipated that this will be available to those attending Westmead.

ØPreliminary
plans have been drawn up for the extension but as always, the devil is in the
detail. Discussions are ongoing and when parties are happy, the plans will be
shown at Westmead and comments invited.

ØA
building conditions survey has been commissioned and the results should be with
us within the next few weeks. The report will also give an estimate of the life
of the building to which the extension is to be added.

Reablement as part of
Westmead

If
you would like further details please talk to David
Brown at the centre.

ØFruitful
discussions have taken place with the Neuro rehab team. As a result, staff at
Westmead will be shadowing staff in the team and will be offered training by
the neuro rehab team in various interventions – all with a view to Westmead
staff continuing with the rehab regime at the centre, under the supervision of
their staff.

ØThis
rehab programme will be for six weeks at no charge to the individual. Not all
people receiving input from the neuro rehab team will be suitable however and
the programmes will be carefully structured. The opportunity to access this
programme will be open to all. Wokingham’s eligibility criteria will not apply
for this six weeks.

ØDuring
this six week period there will be an assessment as to whether the individual
has an eligible need (remember Wokingham’s criteria is set at critical). If
eligible and the individual wishes to continue, they will be funded accordingly.

ØThe
spin off for Westmead is that the staff will then be able to offer goal
focussed rehab programmes to existing and new attendees.

ØStaff
from the Neuro rehab team will keep an oversight on the Westmead staff rehab
activities and will offer advice and guidance.

Sports/Exercise

ØDiscussions
have been ongoing with the Sports development staff. As a result we are
exploring two possible developments, both to be sited in the centre. These are

oA
range of exercise classes specifically designed for Westmead attendees but with
an invitation to any family member to join in. If not full, the opportunity to
join in will be offered to interested individual outside of Westmead

oA
range of exercise classes open to all but with the opportunity for Westmead
attendees and their family to join if they wish.

ØThese
classes will be either no cost or low cost and if successful will be repeated.

ØPlease let staff know
of any particular exercise/sports you might like to sample. Adam (sports
development) is quite flexible!

Outreach/Development
worker

ØFunding
has been agreed from the Prevention budget to develop an outreach role. The
funding application came about as the result of discussions in DOSG. The
question was asked - What happens to those who either don’t meet our
eligibility criteria for day activities or who go through the rehab period and
exit having been assessed as not eligible?

ØThe
post holder will work with these individuals (should they choose) in either
identifying possible alternative resources or even setting up small groups with
others in the voluntary sector. The role will evolve over time but will be
focussed on what those individuals and their families identify as needing for
themselves.

ØFurther
details as to the exact amount and any conditions attached to the funding have
yet to be received but it should be possible to appoint to this post within the
next few months.

Hydrotherapy

ØAgain
as the result of discussion in DOSG, we have been looking at what opportunities
there might be in the area for individuals to access hydrotherapy. Two possible
candidates have been identified and two of the DOSG team have visited. They are
the Royal Berkshire Hospital (RBH) and RavenswoodVillage.

ØRBH
are currently reviewing the use of their pool and seem likely to expand its
use. At present they are looking at the needs of those in hospital and are
wanting to expand its use in-house. They are open to the idea, however, that if
there are spare slots then these might be made available to groups and
individuals outside of the hospital. They hope to conclude this review in the next
month or two.

ØRavenswood
consists of a group of residential home for adults with a learning disability
in Finchampstead. Based on a village model, it also has additional facilities.
These include a hydrotherapy pool and gym. As with RBH, they are reviewing the
use of the pool and seem very open to the idea that it might be used by outside
groups/individuals when not required by them. It is about to undergo
refurbishment and will be out of action from September, opening again in
January 2013. We hope to continue the dialogue during this period.

Membership of DOSG

As before, we would
invite volunteers to join DOSG – either from those attending the centre or from
family members.

If you are interested, please let David Brown or a member of staff at Westmead know.

Do you have Secondary Progressive MS? Like to take part in a survey for a £40 reward (which you could choose to donate to a charity of your choice, even BMSTC! ;0) Then read on: "For the research we are looking for patients that have Secon...

dary Progressive Multiple Sclerosis (SPMS) preferably with a EDSS score of under 7. ( we do appreciate that some patients may well not know if they have SPMS but the majority of people that have had MS over 10 years will have progressed to it from the RRMS.) We are interested in speaking with both patients who experience relapses within their SPMS and those who no longer experience relapses.

As part of the research we are asking them to do is take part in an interview over the telephone and using a webcam. They will be interviewed by a researcher from Adelphi International Research. (We can send them a webcam if they don’t have one and it is theirs to keep afterwards). The purpose of this study is gain an in depth understanding of MS from the perspective of the patient, looking at the impact of the condition and medication on their quality of life with an aim to improving this. The data collected from the research will then be used to inform the pharmaceutical company in its current product development strategy.

We would like to reassure the patient that their identity will be confidential and although someone from the pharmaceutical company sponsoring the research may observe (via webcam) there is absolutely no way that taking part will affect any treatment they receive or any benefits.

The interviews need to take place from Wednesday 22nd – Wednesday 29th August if possible although Adelphi are able to do interviews till the end of the w/c 27thif necessary.

As a thank you for the patient’s time we are offering £40 which can be given to them as either a Amazon voucher or cheque.

If anyone is interested please could they contact me personally by calling me on 07968 631938 or on 01189474956. ( I am the local contact and recruiter for the research for DeFacto Research who are working for Adelphi Research).

Makers of the cancer drug, alemtuzumab, which has been shown to benefit people with relapsing-remitting MS have reported they are applying for a licence for the medicine to be available to treat people with MS.

Wednesday, 15 August 2012

Professional Opera singer Adriano Graziani and the Port Talbot Cymric Male Choirwill be performing on Saturday 22nd September at St Mary's Church, Henley-on-Thames to raise money for BMSTC and the Henley MS Support Group! Tickets will be available soon from BMSTC at £15 each. In the meantime, for further information please see our events page here!

We will be the Top Tier Local Charity for next year's Reading Half Marathon. This means that the Berkshire MS Therapy Centre will be moreprominent at the event and have more Gold Bond places to get an even bigger team. Please email jackie@bmstc.org if you want a place or know someone who would like to be part of the team:)

The guideline recommends that detailed assessments should be offered to people who have neurological conditions including MS
The National Institute of Health and Clinical Excellence (NICE) has published Clinical Guideline 148 on urinary incontinence in neurological disease: management of lower urinary tract dysfunction in neurological disease. The MS Trust contributed as a member of the Urology User Group Coalition. For more click here.

If so I would like to invite you to spend 10-20 minutes to take part in an anonymous research study to investigate the attitudes, opinions and experiences of wheelchair users and their travelling companions relating to the U.K. overland rail network. It does not cover private tourist lines, the London or other underground networks, or trams. For more click here.

The UK MS Register, launched in May 2011, has published its first set of data.
The research shows that the number people with MS who are in employment is much lower than the general population, and about half experience anxiety or depression. For more click here.

Earlier this year we held a small focus group, on 'Living with incontinence in Berkshire West'. The problems raised were many and serious and the discussions were both riveting and ...

depressing. A report was produced for local service commissioners, who are aware that significant improvements must be made in the ways people affected by incontinence should be helped. To push along these developments we now need larger amounts of data, so once again have combined forces with West Berkshire Local Involvement Network (LINk) and agreed a postal survey we are about to launch. See survey here.

For anyone who is interested we can provide hard copy of the attached explanatory letter and form, with a reply-paid envelope, so participation is both free and anonymous. We can either post these to anyone who requests one or supply you with as many survey forms as you may need to forward to people who you believe could be interested. Each survey pack is in a stamped A5 envelope that has not been sealed, allowing you to insert your own covering note should you wish, while saving you the cost of posting out the survey. Of course, anyone may print and complete a survey form by downloading the attachment, but that way there is no pre-paid return envelope.

Please would you consider the great value that will attach to us getting a good response to this important and timely survey and take a few moments to think about how many survey packs you will need to forward to those of your members who may wish to take part? There is no postage cost to you or your members. Everyone should be most grateful if between us we can improve the lives of the many individuals living with incontinence.

Dame Kelly Holmes MBE Double Olympic Champion says ""I have seen how important sport can be in people's lives, both as athletes and fans. But the concept of using sport to rebuild a life shattered by paralysis adds another perspective. The work that Sportability does is not only fun, but it helps people to redefine themselves and achieve far beyond the confines of the wheelchair."

AB Walker & Sons has pledged to raise funds for the centre over the next 12 months and will also be taking part in events including the forthcoming Walking for Miles event in Henley on September 6. Read more here!

Thursday, 2 August 2012

Source MS Society:
A trial funded by the MS Society has shown that cognitive behavioural therapy (CBT) is better than supportive listening for helping people adjust to the early stages of MS. Read more here.

People with neurological conditions such as epilepsy, multiple sclerosis and Parkinson's disease suffer "neglect" by the NHS, claims a report by an alliance of charities representing patients. Read more here.

BETHESDA, Md., Aug. 1 (UPI) -- U.S. researchers said a type of immune cell that contributes to multiple sclerosis may help in the development of new drugs to treat autoimmune disorders.
Dr. Bibiana Bielekova, an investigator at the National Institute of Neurological Disorders and Stroke, part of the National Institutes of Health, said the discovery helps define the effects of one of the newest drugs -- daclizumab -- under investigation for treating MS. For more click here.

In the spirit of sporting events the MS Trust is giving away 10 copies of our award winning Move it for MS work out DVD featuring Mr Motivator. In order to win a copy, like and share this post and tell us in the comments why you should win a copy. 10 winners will be chosen and sent a copy of the DVD. For More about MS exercise visit http://www.mstrust.org.uk/information/exercises/

A new class of drug developed at Northwestern University Feinberg School of Medicine shows early promise of being a one-size-fits-all therapy for Alzheimer's disease, Parkinson's disease, multiple sclerosis and traumatic brain injury by reducing inflammation in the brain. Read more here.

The MS Trust has always been committed to the MS specialist nurses and therapists because we know how much difference they make to people living with multiple sclerosis.
The nurses are there at the end of the phone, at the clinic and many are able to make home visits. They understand what its like to live day to day with MS and can give expert advice on symptoms, therapies, treatments – any issue, big or small. They are passionate about making sure that people with MS can manage their condition, get access to the care and support they need and can focus on living their life rather than dealing with their disease. Read more here.